Evaluation of my 5th Chemo (bad news)

I don’t want to postpone writing the next post any longer. For your sake (I don’t want to have to filter information) and my sake (I want to write it down while I still can read my notes). So here it goes.

On the 3rd of June we had to be in the hospital again for a check (for the proceedings of this check I refer to my post “Evaluation of my 4th Chemo“, it’s always the same procedure). This time the Neuro-Oncologist was accompanied by an unknown (to us at least) Neurologist. She was very friendly though (Super Nurse was not there).

When asked I told him that I was doing well in general only I was from time to time suffering from headaches (severe flashes of pain) and nausea attacks (heaving, dry vomiting). He still decided to let me have the full 420mg Temodal and the other anti-nausea medication. We told them were pleased that it all went without the major side effects as we were told there would be. And also that we were happy that I had only one chemo left.

That caused some confusion on the other side of the table. Weren’t we informed that the second biopsy showed that I was was suffering from a 4th degree tumor? That came like a cold shower. When we asked Super Nurse (pls refer to my post ‘Super Nurse’of the 19th of May) for the DCvax treatment she answered clearly “no, you’ve a 3rd degree tumor and regulations require you must have a 4th grade tumor to apply for a DCvax Brain treatment”. Had we misunderstood Super Nurse or did we? They told us about the second bioptie and that must be some misunderstanding? Eventually we left his room, still shell shocked about what we just heard.

We decided to record the next session (this hospital is quite tolerant with allowing foto’s, documents and reports to be copied) which will take place early July. Keep your fingers crossed please all of you out there!

Super Nurse

The Neuro-Oncologist told us last week to contact the Super Nurse for more information about the end-phase. So we made an appointment with her for today. When we arrived she was already waiting for us. We had a number of questions for her:
 1> can you please define the end-phase?
 2> will I be in pain during this end-phase?
 3> can I donate my body to science?
 4> what if Monling can no longer take care of me?

Definition: End-Phase
The end-phase is defined as the phase where nothing (medication, surgery, radiotherapy, chemotherapy) helps anymore. This phase will take a maximum of two to three weeks. In this end-phase you’re treated with drugs that make sure that you have no pain and make you tired until you loose consciousness (coma) and finally pass away.

Other answers:
During this end-phase patients can’t stay in the hospital (mostly because they can’t treat you anymore so they need your bed). Most die at home, other people want to die in a hospice (it mainly depends on whether you have family taking care of you or not). Over the next weeks I’ll try to find some information about hospices.

Super Nurse’s answer to my question about donation was disappointing though understandable: I can’t donate my dead body for transplantation purposes because I received chemotherapy. Only the cornea (NL: hoornvlies) can be salvaged. Then I told her that I also was willing to donate my body to medical science. She told me that she already asked the right department and received an e-mail from them (dept. Anatomy and Neuroscience). She gave me the e-mail with the telephone number in it. I’ll call this number one of the following weeks.

We asked her also about the DCVax and she answered that I must comply with many rules and regulations, one of them being that I must have a tumor of the 4th grade (most severe grade Glioma). I ‘only’ have a (2nd grade) astrocytoma in my motor function area and an anaplastic (malignant) astrocytoma (3rd grade) in my speech function area. So no DCVax for me yet (fortunately).

The snot thickens

Got up at 10am this morning from the sounds of the phone ringing with a splitting headache and sore muscles and joints. How nice. The walk to the hospital yesterday through a rain storm and havind to spend hours in a cold examination room (without my beloved long johns) have probably worsened my flu.

After a quick breakfast have I started answering e-mail. My today’s objective is to finish draft memo and org chart for others to complete and I have to go to the hospital for a blood check that is overdue. But first a few lines in my blog about an e-mail I just received from an Italian friend who sadly recently lost his spouse to cancer. The topic is DCVax-Brain Cancer Vaccine Enters Clinical Trail.

There are a few things interesting. First of all the article speaks of brain cancer whereas we were told that any cancer in the brain is called a brain tumor. I have to check this. Then there is a description of a vaccine. It appears to be possible to create a kind of individualized vaccine based on two components: (1) tumor cells from the patients’ removed tumor and (2) purified dendritic cells or immune cells from that patient.

The article states that the trial is for patients with a glioblastoma multiforme (grade IV), which belongs to the family of astrocytomas. I’m still not sure what type of glioma I have, my neuro-oncologist and neuro-surgeon continue to say that this will only be known during/after the surgery. However, from all information gathered so far (e.g. Astrocytoma: Causes, Symptoms, Diagnosis and Treatment) do I guesstimate that I have a astrocytoma (grade II).  I therefore assume that I do not (yet) qualify for this vaccine. It is definitely worth following up though. I will gather more information and discuss it with my neuro-oncologist. I’ll keep you posted.